His parents, Shawn and Jill Feeney, had never heard of it until the diagnosis. Ryan has neurofibromatosis, a disease that causes the growth of tumors that also can make bones brittle. It is incurable.

"To pronounce the word, let alone spell it, was a challenge in itself. So there was a lot of research to find out exactly what this condition was," said Shawn Feeney. "We've gone through a pretty tough journey with Ryan over the last two years to get him to where he is today. We were faced with the decision after doing surgery on his leg and chose amputation to give him the best option to live a nice, healthy life without too much concern."

Ryan's leg was amputated when he was 20 months old to stop the leg from breaking and to ease his pain.

"Here he is today. He's a fabulous, wonderful handsome little boy that has no fear," Shawn Feeney said.

Sometimes called NF, the disease is also known for "café au lait" birthmarks and the growth of multiple tumors.

Ryan's parents are known for their tireless efforts to raise money and awareness of NF.

"NF affects one out of 3,000 births and that's a lot of children being born with NF, but you don't hear about it as often as other disorders," Jill Feeney said.

Ryan will need a new leg about every 9 to 12 months as he grows. He and his 6-year-old brother Jack are constantly on the move, running and jumping.Ryan likes every sport and is a big Bruins fan.

"My favorite person from the Bruins is Patrice Bergeron," Ryan said.

So for his new prosthetic leg he wanted to get a picture of Bergeron's face on his leg, he had to settle for the Bruins logo.

May is Neurofibromatosis Awareness month. The Feeney's are using this time to let others know about the genetic disease.

"We don't look at like 'woe is us.' We look at it like what can we do to raise awareness," said Shawn Feeney. "Maybe find the next cure that can lead us to something bigger and better."

TODAY SHE WAS SCHEDULED TO RECEIVE A CADAVER KIDNEY AT TUFTS MEDICAL CENTER. HE HAS BEEN FACING HEALTH CHALLENGES SINCE HE WAS A BABY. PAM CROSS INTRODUCES US TO A LITTLE BOY WITH A BIG SPIRIT WHO MARKED A MAJOR MILESTONE TODAY. IT IS HARD TO GET ONE PICTURE OF RYAN FEENEY BECAUSE HE RARELY STANDS STILL. A BIG BRUINS FAN. TAKE A LOOK AT HIS LEG. HIS BIG BOY PROSTHETIC LEG. HERE HE IS TODAY AND A FABULOUS WONDERFUL HAND SOME LITTLE BOY THAT HAS NO FEAR AND CRUST KEEPS ON GOING. HE IS CELEBRATING HIS FOURTH FORD SOON. WHEN HE WAS FOUR MONTHS OLD HIS PARENTS LEARNED ABOUT N.F. TODAY THEY WANT OTHER PARENTS AND PHYSICIANS TO BE ON THE LOOKOUT. IT AFFECTS ONE OUT OF 3,000 BIRTHS AND THIS IS A LOT OF CHILDREN BEING BORN WITH N.F. BUT YOU DON'T HEAR ABOUT IT AS OFTEN AS OTHER DISORDERS. THE GENETIC DISEASE MANIFESTED MANY FORMS INCLUDING CANCER. LEARNING DISABILITIES AND CAN CAUSE BLINDNESS AND DEAFNESS. EVERY NINE TO 12 MONTHS HE WILL GET A NEW PROSTHETIC. HE WANTED BERGERON THIS TIME BUT SETTLED FOR A TEAM LOGO. HIS BROTHER JACK HAS OTHER IDEAS. WE LOOK AT IT LIKE WHAT CAN WE HELP DO TO RAISE AWARENESS. FROM FUNDRAISERS TO FORUMS, THEY ARE TRYING TO SPREAD THE WORD ABOUT N.F. AND WHAT IT IS AND NOT JUST HOW YOU LIVE WITH IT BUT HOW ROW THRIVE. IN MELROSE, PAM CROSS, WCVB NEWSCENTER5. LOOK AT HIM. HE SHOOTS AND SCORES. GOAL! AMAZING. LOVE HIM.